Complex care needs for my husband

It is so painful to recognise that you cannot care for someone you love but nobody can provide expert 24 hour care however much they want to. I agree that you must resist the bullying of the social workers who are not concerned with your well being, only with getting someone off their books. The system is awful.

Having recently supported a friend through a very similar situation please don’t agree to accept your husbands care at home notjust. Our friend tried, her husband had to be admitted to a fairly inappropriate home as an emergency, she was very unwell and remains so. Social Workers now accept the decision to press for care at home was wrong, the family continue to seek a move to a more appropriate home and to support their mum while she struggles with serious health issues. I’d hate you to be in that position.

Has he had a salt (speech and language therapy) assessment to look at his swallow?

They always try and push people home

Grannynannywanny has given excellent advice. Don't let social services bully you. And play up any health problems you have and play the frail older woman. Even if you aren't.

They can't just send him home just like that. Phone you GP surgery tomorrow and get the backing of your GP also the backing of the nurses and doctors who are caring for him .

Refuse point blank to have him home. They can't force you . It's awful you having to fight this way to get the best care for your husband. But you can't risk your health not matter how much you love your husband. 💐

Thank you so much granny nanny wanny

Notjustaprettyface with the best will in the world you are not going to be able to provide your husband with the level of care he requires. Even with a care package in place it’s likely that there will be a gap of many hours between carer visits.

You’ve said your husband has mobility issues and pressure sores. You couldn’t possibly change his position or deal with episodes of incontinence. Realistically your poor husband could be incontinent within an hour of the carers leaving but they’re still not going to return till their allotted time which could be 8 hours later. His pressure sores will worsen and are likely to become infected.

For your husband’s wellbeing and also yours please have a straight talk with his social worker and make it clear you aren’t able to look after him at home. He will receive the 24hr care he needs in residential care and you can visit every day and encourage him with food and drink.

The alternative is to risk your own health as well as your dear husband’s 💐

Hello everyone
Thanks again for your messages
You have convinced me that it is not right to have my husband back home and I am at peace now with this conclusion
However , I would like to update you on what’s happened today
A social worker has phoned me to say that John’s needs can be met at home and they are proposing to send him home with a package of care
So , now , what do I do ?

Please don’t think of having him home, you will kill yourself trying to look after him. As others have said spend time with him at meal times. It’s a nightmare time for you and I wish you luck.

It's such a tough time and there are so many emotions colliding with each other.

Remember, there are options available but it is important to make the right choice, not for him, not for you, but for both of you.

Take some time to try and remove yourself from the situation (easier said than done!) and weigh up pro's and con's of each option and try and look at them objectively and then you can decide whether caring for him yourself, home care, live-in care or a care home is the best option for you.

Sometimes, the hardest decision is the best decision but only you can decide that.

I feel this is a terribly hard time for you and nursing home placement isn’t taken lightly.
If he goes into a nursing home from hospital my advice is for you to spend what time you can helping to feed him. This should alleviate your worries that staff aren’t doing enough. They almost certainly will be doing the very best they can. I’m sure they will be happy to have you taking the pressure off them.
You will probably see another view of things hopefully in a good way.

Hithere : I don’t know what resources in the uk could help me

The first line should have been highlighted.
The second line should be under the first line.

Eating and drinking is the least of his issues right now.

Which issues would be more important?

You say he has complex needs.
They wold need to be covered too.
Would you have all the support you need in your particular area?
And the strength to organise it?

Sometimes in life there is no good answer.
Only a case of the least worst one.

I'm not being unkind. I'm referring to your thread you started where you agonised over moving him to a relatives house outwith your area because you felt they would provide better care for your DH. You discussed it with your children and the consensus was your DH had complex needs and would be better served in a nursing home. You seem to be determined to find reasons to bring him home, despite what people are telling you, from experience, as to the difficulties. I think Hithere speaks truly and kindly.

Notjustaprettyface I know it's hard to see your husband going through so much. And him losing weight and not wanting to drink if frightening. I can't remember if you said how old you both where. As much as you love and what the best for your husband. You have to and must put yourself first. If you don't you will get ill. Sorry can't remember if you have health problems yourself.

This is my own experience . This is just about looking after parents . My dad's health deteriorated a year after my husband died. But start of 2007 dad hated the sight of his own body . He had lost 4 st even though he eat well. When it came to the February which was the month my husband died 3 years before dad went down hill. He was a very proud man and mom had to help him wash but she wasn't allowed to touch from his waist down to below his bottom. He did that himself. We had to make him leave the bathroom door open when he used the toilet . He hated it but I explained if he collapsed we couldn't get to him. When I was there I had to stay downstairs and mom had to stay in the bedroom. He lost interest in food but would eat for me but only soft things.

In mid April he went into hospital as he collapsed. He spent his 80th birthday in hospital. He came home couple of days later he was given 5 weeks to live. He got weaker but was still proud. The Wednesday before he died I said to him why didn't he want my children to see him. He didn't see them since the Christmas and I was hurt . But he pointed at his body and said this isn't me I don't want them to see this they are the oldest and want them to remember me as I was. My brother's children had seen him but they where bit younger. Should say he would only let me go on Mondays , Wednesday and Friday after he came out of hospital.

Then I understood. He said I am dieing and said I know dad he said promise me you will look after mom as she won't cope. I told him if course I would we had a good talk and said all the things he wanted . I knew then I wouldn't see him alive again

He always got dressed. On the Thursday he said to mom he didn't want to dress . She went to the toilet and couldn't find dad in the house. He had dragged a chair into the garage. Dad had made his own wine since 1969 . Mom found him putting wine in bottles from demi John's so she would have something to drink . She got him into the house and into bed and he stayed there. He refused to let mom call me over.

In the early hours of the Friday morning mom helped him to the toilet did want they always did and when finished called mom . They told eachother they loved eachother. And went to sleep.

Mom woke got washed and dressed not realising dad was dead . She went round the bed to touch him even though he was cold she still didn't realise he died. Only when my brother and me went over did she know.

Dad had decided on the Wednesday he had enough and decided he would die soon. Dad was a very proud man and had had a hard life . But mom and the family was his world.

He was beaten and malnourished as a child he looked after his younger siblings the best he could. He fought in Burma , Indian,Egypt and was parachuted into Naples when there was a plague.

He met mom in 1948 and he finally found out what a real family was . They married in 1950.

My dad had enough of life and hated what his body became but he hated more that we had to help him . But he died on his own terms.

Dad had had a massive heart attack while mom was asleep . She was a light sleeper and would wake at the slightest movement from dad. But he must have decided not to move or make a sound when he died.

I had to lie to my mom when she asked do dead people always look like that. Dad's face was frozen in terror . As I had seen my father in law after he died and watched my husband died I knew what dad had gone through. So said yes . She was glad as she didn't want him to have died in pain. Nor did I ever tell her he had voided his bladder. As soon as the undertaker had taken dad I striped the bed and took the bedding home to wash. Cleaned the bit of urine and my brother turned the mattress and helped me make the bed.

This is my experience of looking after my dad and my dad's decision how he wanted to die.

I nursed my husband on my own 3 years before he died aged 47 . I was 45. He died at home with me and our children. But that's another tale which I have talked about on bereavement forum.

After dad died I looked after my mother in law and mom . Again have talked about that before.

The point is my mom was the last to die in 2017. I have been ill since a child and my health got worse when I
was 29 but always did what was needed off me . I didn't realise until after mom died how much it had cost me healthwise.

Whatever you do please don't have your husband home no matter how much you want to . Do not feel guilty but you have to put yourself first if you don't your physical and mental health will suffer.

Remember to eat healthy food and drink and sleep when you can . I know it's hard but you need to let others take care of your husband.

I am now 65. But I would do all I did all over again as I am me .

But I don't want anyone to go through what I did. Putting your husband into a home was heartbreaking for you but you did what was best for him and you.

It's not wrong to put yourself first . You love your husband and are doing the best you can for him . He may have decided he has had enough of life if he has nothing anyone can do will stop him from dieing .

I know I ramble on but it's how my mind works. .

Having your husband home won't help you or him . I know how hard it is looking after someone at home I did it by myself for my husband he had terminal cancer and had my mom live with me for 18 months before she died she had cancer and dementia. She was 90 when she died. Again I did it on my own.

Take care of yourself others are looking after your husband. You are feeling conflicted because you love him but would he want you to become ill or suffer because of him . The love you share lasts forever. Even after death.

Grandmabatty is right

You want to do what is best for him or what alleviates your guilt?

When medical professionals do not push for sending the patient home - that speaks volumes how much care he needs

Staying kind does not mean reading to what anybody wants to hear and ignoring the red flags

I have been in your shoes - I hate for you to be in this position.

Eating and drinking is the least of his issues right now.
Who is your support system? Antipatory grief and denial are no joke - what resources in the uk could help you cope better?

Grandma batty, which previous thread are you referring to ?
I do listen to advice but life isn’t as black and white as that in my opinion
I want to do what’s best for him
And yes I might complain later
Complaining is human and everybody does it
So stay kind please

Based on your previous thread, I foresee you taking him home regardless of advice given and you'll be back here complaining about what you have to do in six months time. Private carers are like hens teeth.

Thank you very much everyone for your kind thoughts and practical ideas
I will see how it goes
His nursing needs might improve but I wouldn’t contemplate having to wash him etc
That would have to be done by private help at home should he come home
He does seem very depressed when I go and see him and he has said he’s bored so that was another reason why I was thinking maybe coming home would help him
I also struggle with the concept of still having a husband but not really having one of that makes sense

You don’t say how he is mentally, how unwell he is or how he responds on your visits, but it does sound as if he would be very much better off in a Nursing home. With pressure sores, eating and drinking problems he’s likely to be in need of much more input than he would receive in a Care Home.

You should be able to see if he’s just unhappy and this has affected his interest in eating properly. No, he cannot be forced to eat but he’s unlikely to benefit from just being offered a meal on a tray and rather left to his own devices and this might have been the case in a hospital or Care home situation. He possibly does need to spend some time with further tests in hospital and medical assessments, but unless he shows a huge improvement on discharge, it would make much more sense if he is then moved to a Nursing home and you spend a lot more time with him there - particularly at meal times. If you take in home-cooked treats, things that will tempt him and will put on weight, so that he can eat little but often, it’s possible his appetite will return. And use a small, coloured plate or dish!

All the other ‘heavy’ work and nursing care is best left to those employed to do just that. All the time spent on turning him, bathing him, changing bedding, etc., is not something you should want to wear yourself out on when you can cook for him, feed him, spend time and cheer him, because this will take the pressure off you and a lot of the responsibility. Try to make it easier on both of you. Good luck and I hope your care and input will make a difference.

It is very hard to come to terms with the fact that you cannot care for your spouse yourself at home. I have been there and know how hard it is. But when there are real nursing needs like sores, incontinence and loss of mobility then a nursing home with experienced staff and all the right equipment is the right place. I used to go to the home late morning and feed lunch to my OH ... it took ages and realistically no member of staff would have had the time to sit with him and do this. I would encourage him to drink the Ensure drinks, so I would know that each day he had had some good nourishment and hydration.
It was a compromise but I think it worked OK.
You need to try to be realistic about what you would like to do for him and what you actually can do. I understand how hard this is and send you a hand hold.

You need a chat with the Dr in charge of your husband in the hospital, not to bring your husband home, as others have said, he’s in the best place, but to discuss your concerns.

My late mother would only eat food cooked by me,from when my dad died until she died 12 years later .I took her meals to hospital for her every day and she ate them but she still lost weight I think due to loss of muscle .She was under 5 stone when she died ,yet the nurses used to comment she could eat lke a horse .There may well be another reason for your OH's weight loss ,get that checked out before making a decision about bring him home .Or like I did take his food in for him ,that is probably a better solution than struggling on alone at home with him

Such a difficult time for you , I think the advice about going into the nursing home at mealtimes is a sound idea. Please take care of yourself, remember that if he is in care he needs your strength and you can only safeguard that if you look after yourself. Reading between the lines it appears your DH has complex needs , only you can make the decision about whether he is at home with you or in a nursing home. I wish you well , balance your emotions with practical thoughts. Good luck .

I think his needs are too complex for you to be able to cope with but it must be awful watching him losing weight and feeling so powerless.. If he is in a care home you can look after yourself and have the energy to visit him regularly... and if you go at mealtimes you could encourage him to eat.. he will at least have his physical needs met by the home and you can continue to show him love and friendship which is so important at this stage of his life..